The GRIN Project

This is our personal story, through it we discovered that we are not alone and that we are part of a supportful and growing community that has the potential to affect people worldwide, and we are inviting you to take part. Three years ago we discovered that our first born, Adam, who at the time was a 1 year old, is suffering from a rare genetic mutation called GRIN disorder that causes severe epileptic behavior in the brain resulting in physical and intellectual disabilities. This genetic mutation is extremely rare and we have discovered there are only 400 children worldwide diagnosed with this rare disorder like our beloved Adam, and the medical field has yet to come up with an explanation or solution. Today, our adorable son, Adam, is 4 years old. He has a huge smile and an even bigger heart, but he cannot function on his own, nor can he talk, walk or eat by himself, but still has a captivating laugh that positively affects any one close by. His smile gives us the power to continue this journey every day and further reminds us that Adam deserves more and that we will do whatever it takes to give Adam a normal childhood and independence. His smile gives us the power to continue this journey every day for the past 2 years, and every day we remind ourselves that Adam deserves more! We will do whatever it takes to give Adam independence and normal childhood. Since we’ve discovered that Adam suffers from a GRIN2D gene change, we have learned and researched more about this rare disorder, and met with other GRIN families from around the world.We felt obligated and decided to set up an organization called The GRIN Project. The purpose of the organization is to find a cure for GRIN children while connecting families in similar situations and sharing all the available data regarding the disorder. We have contacted researchers, applied for research funding and met with many doctors and specialists in Israel and worldwide - anything within our powers that will help promote treatment for Adam, and all GRIN children. Our efforts have paid off and we have been able to engage an extraordinary group of top researchers and clinicians who work in collaboration with leading research institutions. This group has been exceptionally engaged and committed to our project and with their magnificent work, the upcoming results may not only find a cure for GRIN but also benefit millions of people suffering from similar brain related disorders such as Epilepsy, Dementia, Alzheimer's, Schizophrenia and more. “Rare diseases are a window to understand how the human brain works”, said Dr. Moran Rubinstein, brain researcher at Tel Aviv University, who is leading the research in collaboration with Prof. Keren Avraham, Vice Dean of the Faculty of Medicine at Tel Aviv University.A research breakthrough based on Adam;s rare case, could shed light on different mechanisms in the brain that will help understanding the effect on the brain's ability to function from such disorders. In just about two years since launching the research there have already been positive results. Unfortunately, such research takes a lot of time and resources which includes cutting edge technology in addition to large teams of researchers, lab technicians and students. We invite you to take part in our challenging journey, which we believe will lead to finding a cure for Adam and all GRIN children, and along the way will shed some light on the research of the human brain. Please share and pass it forward. May you always be on the giving side. Thank you from the bottom of our heart! Banet Family. Important notice! All donations are tax deductible.